It has been a considerable time since my last pure post about COPD (chronic obstructive pulmonary disease). I have been giving folks an update on my general health at specific times, but that is just an update. And while these updates relate to COPD, they are about my health and really not about COPD. Though it can be said that any and all of my health issues relate back to COPD.
I stated this BLOG in June 2012, and while nothing of any real significance has happened in the last 6 months on the medicine and health advances aspect of COPD, it has gotten a ton of press. I have seen articles on Yahoo, the local newspapers, and a variety of other written forms of publication. I have also seen segments on Today, and other national shows. So the word is getting out, and the more the word gets out, the more attention the disease will get. And this will be the key to making real headway against this disease.
Here are some COPD facts:
COPD is the 4th leading cause of death WORLDWIDE now, by 2020 expected to be 3
75 percent of those affected remain untreated
The World Health Organization estimates 600 million people worldwide have COPD
About 24 million folks have COPD in the US, but only about half have been diagnosed
In about 25 percent of the diagnosed cases the individual never smoked
Men are much more likely to have COPD than women
Senior citizens are much more likely to have COPD
The truth be told, I really don’t expect any significant findings or any major new medications to come into play while I am still here benefit from such. Sure it would be nice, it would be wonderful, but it isn’t going to happen. Yet I read each article, and I watch each segment on TV in hopes of hearing those magic words “We have a breakthrough on the COPD front.”
Until then, and as long as I can breathe without the support of a respirator I will do my best to talk it up and to help others deal with it in ways that are meaningful to them.
As for myself, I was diagnosed with COPD years ago. I went thru the progression of defined illnesses. First I had a touch of asthma, then it might be emphysema, then it was acute bronchitis or chronic bronchitis. The medical community finally decided on COPD as the umbrella that these respiratory diseases would collectively fall under. The bottom line is my lungs are screwed, and along with them me. But being screwed doesn’t mean you give up. It just means you fight harder.
In June 2012, I wrote “The most difficult aspect of dealing with COPD for me is when I gasp for breath. For no apparent reason, I lose my ability to breathe and I gasp. Sometimes in only lasts for a second or 2, other times 3 or 4. It is very very scary, and it fortifies my feeling of helplessness. Thoughts of, is this how it will end when the time comes, go thru my mind…..” Nothing has happened since last June to make this any less scary, nothing has happened that changes the outlook, yet I continue to fight.
COPD braces you from a multitude of directions. It attacks you physically, mentally, emotionally, economically and, it sometimes strips away your will. But what I have found is that folks find a way to cope. Folks find a way to fight, and folks are quite resourceful in their efforts. We all have periods of good and bad, we have period of doubt, but we continue to fight.
In my mind it is the tackling the physical aspects of COPD is the easiest. Because no matter how slight the exercise program might be you’re exercising, and that is the important part. To keep the body going, to keep moving, that is an important key. I recently completed 12 weeks of physical therapy and breathing exercises. The change is significant, and I am so much physically stronger than I was 12 weeks ago. But I don’t breathe easier, I don’t have more wind, I still gasp for breath after the slightest exertion. But thru the breathing exercises I can sometimes better control getting totally winded. Physical therapy has had such an impact on my strength, that by itself, is enough positive reinforcement to keep me working out. And as my strength increases my breathing practices are continually reinforced as well. That’s a good thing.
Is it enormously difficult to fight off the mental and emotional challenges presented by COPD. To stay upbeat, to maintain a positive attitude, to find reasons for joy on a daily basis, to find the strength to not lie to your family and friends on how you feel (both physically and mentally), and to find ways to gracefully accept your limitations, are just some of the challenges one faces daily. Each of us that suffer from these issues and challenges, deal with them differently, yet we all find ways.
I want to continue talking of the emotional impact of COPD and some of my fears these emotions bring. Every time I get a tickle in my nose or throat I wonder if it’s the beginning of a cold or the flu. Because if it is, then I have to worry about when will it become pneumonia or worst an exacerbation, which means at the minimum a week in the hospital, followed by from 4 to 6 weeks of intense IV drug treatments. I wonder if I am going to have the energy meet expected and unexpected events. I worry if I will have the energy to meet the commitments I make to friends and family. I worry about how much the medicine costs to keep me remotely stable. Because I have been told that I am un-operatable, I fear that I may have other health issues come into play that do require surgery, and how that play out. I don’t for a second believe that I am the only sufferer with these fears. And I am so fortunate, I have the means to handle most of them, but some of my friends in the discussion group don’t have a strong family circle to provide assistance, some don’t have the same resources I have, and many are further down the road than I am. So I am sure these are shared fears. But for every real fear, there are some not so rational fears, and those are much more difficult to focalize on and resolve.
Personally I accept and deal with these challenges better some days compared to others. And my strongest defense mechanism against the mental and emotional challenges has been through writing. I was brow beat into starting this blog, my wife had been after me for months and months, to start it, I don’t know what she hoped to gain, but I know that because of her constant nagging about it I have gained significantly. It provides me an outlet, it gives me a purpose, and it has allowed me to help others. And yes I have thanked her repeatedly. I also joined a COPD & Emphysema discussion group which I am an active member, to which I contribute on a regular basis, offering my thoughts and encouragement to those that need and seek it. And thru helping them in some small way I help myself in a large way.
Another mechanism I have available to me is comes from my health care provider. They have a group of health coaches, and they have been particularly helpful. The coaches are specialized to the needs of the individual. For instance after I had my bypass surgery, I had a cardio specialist call and talk to me about heart related issues, and treatments. Now I speak to a generalist and pulmonary coaches. These coaches will call at least once a month to just talk. They can’t and won’t prescribe or diagnose, but they and do find out how you’re doing, what new meds you might be using, and if they seem to be working. They can and do offer potential strategies, but for the most part they talk and allow you to get things off your chest. I for one have found that I am less likely to lie to my health coach about how I am feeling, both physically and mentally than any friend or relative. And yes I lie to my family and friends, because I don’t want to add to their burden of caring for or about me. I don’t want any additional pity. I don’t know how prevalent lying is among folks with COPD, and maybe lying is too strong a word, a more appropriate term would be the omission of all facts. Some of us want to keep some secrets, some of us want others to think we are doing better than we are, some of us realize that these small omissions don’t hurt as much as the truth will. And maybe these omissions are defense mechanisms allowing us to lie to ourselves. You the reader need to make that determination.
One of my health coaches is responsible for my involvement with the COPD & Emphysema Discussion Group, via DailyStrength.org. This has been a saving grace for me. There must be 1500 members of this particular discussion group, but only 45 or so are active. Yet from these 45 I have gained insight, strength, encouragement, a laugh or 5, knowledge, and emotional support. 98 percent of the group is made up folks that suffer from COPD, the other 2 percent are folks that are spouses or children of COPD sufferers. And even the non-regularly participating members of the group jump in from time to time with useful information or insight.
I don’t know if I added to your knowledge of COPD, but I do thank you for taking the time to read this. COPD is a killer pure and simple. If you feel you have pulmonary issues please see your doctor. Earlier treatment won’t stop it, but it will allow you the opportunity to fight it better.
Please take care, as always your comments and suggestions are welcome. Take care, Bill